Computus interruptus, Part Deux


My computer woes continue but I am getting used to the necessary changes (taking the elevator to the computer centre just off the front lobby of my building, for example. While I try to look presentable it need not be a fashion show.)

To add insult to injury the web-based email which is associated with my sick laptop’s IP account was not accessible today. So I’ve switched to Gmail.

I had another great check-up at my doctor’s this week. My viral load still isn’t completely extinguished but at 68 I might be able to name them all. The CD-4 is 500. My blood sugar is excellent, too. Doc said I’m looking better than I have all year. I won’t have to wave off the boyfriends, I’m sure, but it is good to get such good feedback.

My mood has been good, too. I know that because I’m rolling with a few stressful situations and I am not yelling at drivers on their cellphones. :)


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Medical update: the news is great!


My CD-4 count (an indicator of immune system health) has doubled to 520 and my viral load (which detects the level of HIV in my cells) has dropped precipitously from 125,000 to just 271.  Notwithstanding the ultimate goal is “undetectable” this is a major leap towards that.  My diabetes, too, is under control and I have managed my way through just a couple of “lows”.

This has me back to the condition I was in prior to my brother Craig’s death in May of 2007 and, in the case of the diabetes, even better. I feel like some more time has been bought!

My mood, i.e. my bipolar condition, has been stable for a few months now, too.

Now I’m off to Perth to spend Hallowe’en with my Mom, sister and Craig’s partner. (It’s just the way a get-together fell into place.) Trick or treat!


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Medical update: Minimal side effects so far


It hasn’t been too long since I checked in about my health but, seeing as that was kind of a new beginning, I thought I would report that all is going well – at least as far as I know. I’ll get the results of my blood work-up in a couple of weeks. Most important will be my CD-4 count and my viral load. When last checked the CD-4 needed to come up and the viral load had a fair distance to drop to ‘undetectable’.

The diabetes is going okay with the insulin. I had to actually drop it a little in the evening as I had a few ‘low sugar’ episodes, which are quite unsettling – particularly the one when I woke up in the middle of the night in a panic.

I have fewer HIV-related pills and capsules to take now (5 in the morning, 4 at night). At night I also take my insanity stabilizers which have been working well, too. There was one night of what I thought was hypomania but I managed to stay indoors and out of trouble.

Someone who hadn’t seen me in a few months told me today he thought I had gained weight, indicating that I seemed to be showing a bit of a pot belly. The sad fact is, however, that I am so underweight my tummy only seems big compared to everywhere else. I’m trying to keep my sense of humour about it, comparing my physique with a praying mantas, especially when my woven pack-sack slumps down my back. I don’t actually know if my weight is down or up or if, as it was at the last doctor’s visit, I have simply stopped losing.

As the cooler weather creeps in I’m wishing I could store more food to insulate my bones. In addition to the occasional meal replacement drink I’m trying to bulk up with avocados and cashews. Other suggestions would be most welcome!


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Medical update: My 16 month ‘holiday’ is over


I am back on meds to fight the good fight with HIV. (Don’t worry Medic-Alert, I’ll be emailing you soon.)

With the help of a lot of insulin, steadily increased since I started it July 17, my blood glucose levels are well enough in control that my doctor told me today that “We’re ready” or “It’s time” (I can’t remember which but both apply.)

My viral load is 125,000 and my CD-4 count is 260.

So, in addition to my “head drugs” for bi-polar II (1200 mg Lithium and 15 mg Mirtazapine), another drug for diabetes called Metformin, and Crestor for cholesterol, the HIV rundown is Viramune, Truvada, Prezista and Norvir.

This so-called drug holiday came about as a result of leaving one drug at home when I dashed away during the crisis in Montreal in late April and through May of last year. In order to prevent cross-resistance my doctor told me to go off all meds rather than do it piecemeal. Then when I got home I wasn’t looking after myself very well, to put it mildly, and yet my blood work was still pretty good so my doctor and I agreed to continue with the break. Then my diabetes began to worsen and, after tinkering with Metformin and Glyburide for a while (I was needlessly wary of insulin), I agreed to start insulin in July.

While all of this was going on my psychiatrist was working me up to a more diabetes-friendly combination so it’s been quite a project but I am optimistic that September will bring good health in every respect.

(Judging by the pain in my seat I know I haven’t gained much, if any, more weight.)

Feeling: Optimistic

My diabetes journey has moved on to insulin injections


It was no surprise when, after reviewing my latest blood glucose monitor readings, my HIV specialist prescribed insulin injections. (He’s been working on me about this.) Diet was not doing enough and the pills could only do so much for so long (approximately three years). I had already been to a diabetes clinic at Women’s College Hospital earlier this month so I was preparing the ground for this. I went back there yesterday with my prescription and to learn all about insulin pens, needles, insulin vials, etc. It was a lot of information to take in but very helpful staff, a nurse and dietitian, gave me hand-outs and wrote down very specific instructions as to when to take my shots, when to test, etc.

This morning I laid everything out on the floor in front of my recliner, like the pieces of a model airplane, read the sheets of instructions, and very tentatively prepared for my first injection. (I didn’t inject last evening because I had taken one of the old medications yesterday morning.) For someone who can’t stand to watch as my blood is tested, this went very well. There is no blood to see by poking the needle in and then gently pushing the plunger (pen cap). It went fine but it’s going to take awhile before I can just discreetly slip into a washroom during an evening meal, peel up my shirt and plunk a shot into my side. (We decided the only place I could possibly find enough to pinch for the injection is on either side of my abdomen, parallel with my belly-button. My weight, stretched over a 6’3″ rack of ribs, is only 130 pounds. That’s down ten pounds since the end of April.)

I was a little freaked out yesterday but 24 hours has eased my anxiety somewhat. So three scoops of ice cream for everyone! :)


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Shaking my fist at diabetes


The point was driven home today that diabetes is a bigger threat to me right now than nineteen years of HIV/AIDS.

I’ve heard it before and frankly, despite taking blood glucose-lowering medications, I just haven’t managed to get the crucial numbers under control. 

Things went off the rails this time last year, with Craig’s accident and death, as evidenced no more clearly than by my doctor’s review of my chart – last year’s – today.  I had been expecting results from last week’s blood tests and, without realizing he was reading April 2007 results, my doctor today rhymed off numbers I have not had since…well…last April. 

The expression on his face changed when he had last week’s results faxed over and all I heard, after confirming the news was bad, was Charlie Brown’s teacher giving me the latest readings. 

“Wah-wah-wah…”

I’ll write them down when I see my HIV specialist the week after I get back from Montréal.  He’ll be quite upset, methinks, (although non-judgmental and ever-cordial) and it would not surprise me if he started me on insulin, a threat that has hung over me for a few months.  Ugh!  My doc today suggested I at least try to improve my daily results between now and then.

I have been cooking for myself much more in recent months, thanks to my slow cooker, but I do go overboard with sugar cravings in the evening too close to bedtime.

I hate having to be so mindful of eating.  Eating, especially eating well, has always been a necessary evil at best – and, while I do get some pleasure out of others’ cooking, meal prep for me has mostly been drudgery.  If Ensure or Glucerna could keep me alive I’d be fine with those little cans.

It used to be, with AIDS hanging over my head, I was encouraged to eat whatever I wanted.  That changed a few years ago.  Then since last year, after having to go off my meds during the crisis with Craig (because I hadn’t packed all of them – and to take some without others risked cross-resistance), I’ve only been taking my diabetes meds.  Goodness knows how bad my numbers would have been without those!

Anyway, I am ranting and full of enough self-blame to be able to minimize the impact of any ‘I-told-you-so’ anyone could offer, kindly or otherwise.

I don’t know where I’m going to pinch an inch to take insulin (at 6’3″, 140 lbs. soaking wet)…but, if I don’t cement myself in self-pity first, I will do what I have to do.

The early stability of the HIV, in the first few months of being off those meds, has not lasted.  As much as I feel so much better off them, it’s time to get back on those babies and so if that means taking insulin I guess I’ll have to roll with that.

I see my HIV doc and my shrink on the same day one week after I get back from Montréal. Just the way it worked out :)

P.S. Suspicious as I am of potential spam, I’m pleased to say that I found a very useful article on the rationale for glucose monitoring by following the first comment here to
Amy’s site
.


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Medical update – I like them apples


Good news from my HIV specialist today.  My a1c has dropped from ten percent last time to eight percent as of my last test just prior to Christmas, so my diabetes appears to be coming under control again.  The scare raised my sugar-consciousness, with a little help from medications, and these are the preliminary results.  I continue to monitor a couple of times a day, though, as there have been some spikes when I have been less careful eating.

HIV-wise, my CD-4 count is 370 (16%), but my viral load is up quite a bit to 77,000, albeit just one snapshot in time. 

As trends go “Fletch” is very pleased with my turnaround and doesn’t need to see me again until the end of March and, without my asking (although I did get him to repeat himself), he is not putting me back on anti-retrovirals yet.  I had anticipated that he might.  Perhaps next time, as we see if my glucolse levels are indeed trending downward.

The doc thought I looked healthy, as so many others are saying I look, so I’m going to run with that until we meet again.


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Dieting with a B.M.I. well off the light end of the scale


I have never, ever, been overweight and even when at my young and healthiest I was probably underweight. Is it any wonder, then, at historic low weights I can’t get my head around being diabetic? Diagnosed with Type-II in 2005 it has been a struggle or, more to the point, not enough of a struggle to get it under control ever since. I think I have been in denial as to how quickly it could affect my overall health.

Right now, as far as my HIV specialist is concerned, it trumps the need to get back on my antiretroviral regimen. Knowing him to be a “hit soon, hit hard” guy with HIV meds it is very revealing that he will not yet re-introduce my HIV-specific because they would likely negatively impact my blood glucose levels. In other words, even absent other potential contributors, my diabetes is out of control.

I can admit that I do not eat enough and that what I do eat is not the variety of healthy foods it needs to be. But it’s not like I’m sucking sugar cubes. While I do occasionally stray over the line, as far as eating sweets, it is most likely the more hidden forms of blood sugar that impact me more. That said, lately I have been sustaining myself on “Oatmeal Crisps”, with dehydrated fruit, and fruit-infused, pre-stirred yogourt – all mixed together in a large bowl and covered with 1% milk.

This must change. I have book-marked web sites which have recipes for diabetics and I have dusted off my Crock Pot to make some healthy meals. Now, in the spirit of The Serenity Prayer, I need the courage to change the things I can.

Things like a feeling of entitlement to good health. It’s amazing how tough that is for me! Things like approaching meal preparation as a good way to spend time rather than a necessary evil! While my stomach has probably shrunk a little, as I notice I take fewer second helpings, I haven’t lost my appetite.

The alternative, which I heard loud and clear from the doc yesterday, would be insulin injections which would raise the question of where could I possibly squeeze enough fat together to insert a needle? Besides, that seems like such a drastic step which I would like very much to avoid.

Motivation - that’s what I must have. And it must be more than a deep desire not to have my mother see another son die before she does. While that may be my worst fear, it may not be enough to keep me alive. There’s a fighter within me – my survival proves that – I need to encourage.

I don’t need lectures. I need to love myself back to health, at least to the point where AIDS is my most pressing health issue again.

This will be the substance of my “check-in” tonight for the new long-term survivors group I am part of for the next few months. It is an inter-agency project of the AIDS Committee of Toronto, The Family Services Association’s David Kelley Program and the Mount Sinai Hospital Clinic for HIV Concerns.

The good news is that my CD-4 count is still 400 (not bad) and my viral load is what my specialist called a very manageable 12,000. We have doubled the dose of Glyburide, one of my two diabetes meds.

Now…what to eat…
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Medical update: An amazing check-up


To refresh your memory, I have been off one of my HIV meds (I forgot it at home) since the day after Craig’s ultimately fatal accident on April 24.

While I stayed on everything else while in Perth, I went off everything – more or less – when I had quite a breakdown upon my return to Toronto over the May holiday weekend. I did the obligatory blood test a couple of weeks ago and was anxious, and not optimistic, about the results which I received today from my HIV specialist.

Viral load: undetectable. I can hardly believe it (and I’m still skeptical)
CD-4 count: 340 or so (an immune system snapshot; this is a significant drop but “not surprising”, given the circumstances, according to my doc)

He wonders how my diabetes might have changed through this process. Surprise, surprise I haven’t been monitoring my sugars :)

So my only assignment for the next week is to poke my fingers a couple times a day. If my sugars are high, I’ll call him and go back on one of the diabetes meds.

In any case I’ll be seeing him again next week.

Meanwhile, we are in agreement that I could use a break from all my other meds. The unitended break has not been too harmful so far, apparently, so he is not concerned about a major HIV relapse happening in a matter of days or weeks. When I do go back on whatever combination is found to be workable I will need to carry an alarm to remind me to take my meds because I have fallen away from some good discipline along those lines.

“Fletch”, as he is affectionately known, was genuinely sorry to hear about everything that has happened over the past couple of months and seemed to understand how I could come off the rails as I did.  For as long as I’ve been a patient, some seventeen years, we have not needed to discuss my drinking problem.  Abstinent, as I was most of that time, it had not been an issue until recently.

He asked me how I was doing mentally.

I said, “Better now.” I told him that drinking, as I was, affected how compliant I could be with the bipolar meds. Getting back on those was my first priority when I started to sober up a week ago.

Obviously he is pleased with the steps I have taken to recover.

I feel like I’ve caught a big break – again. Not that I am not due for a break or two, because I can honestly believe that I do deserve to get through these days. I have been a good, involved, compliant patient for many years and Fletch even refers to me as one of his “stars”. Coming from a man with his unbeatable credentials I feel privileged to receive such accolades.  Craig, Fletch pointed out, did not die from HIV/AIDS and he wants me to hold on to the hope that I may not either.

I deserve good health. I deserve recovery. I am going to do what I can to make sure I make lemonade (sugar-free if necessary) out of at least some of the lemons.

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Dealing with what’s in front of me or ‘First Things First’


A careful read, between the lines and otherwise, will reveal in this blog my history of alcohol abuse.  I have also, for periods of time (two significant stints of ten and seven years of continuous sobriety) included myself in the fellowship of self-described recovering alcoholics.

While it could be argued, and rightly so, that I am juggling a lot of plates one of the more pressing issues at the moment is the rapid cycling I have been experiencing with my bipolar disorder imbalance ride which has brought with it poor adherence to my medication schedules. This fuels my guilt, which helps nothing.

I seemed to reach a nice plateau when I discovered connected the dots, at least in part through therapy, between the post-traumatic stress I was experiencing after my 2003 accident and other traumas I had survived from younger years.  It’s a phenomenon an attorney friend told me his colleagues sometimes refer to as the ‘soft head syndrome’.  Trauma unleashes trauma.

So, on an intellectual level, I felt a great deal of relief in going through the exercise of explaining, to myself at least, why I had conducted myself the way I have from elementary school days.  I felt such relief, and even found a way to absolve myself of a lot of guilt, that I foolishly thought I might be able to handle things which had previously given me trouble, such as drinking, with new insight and restraint.  And for awhile I did quite comfortably.

When it became abundantly clear that I was bipolar I again felt some relief and, in fact, could see how it had been an issue probably years and years before the depression which came with the post-accident PTSD.  As I drank I did so moderately, and maintained my course of medications both for HIV/AIDS and bipolar – carefully avoiding a drink too close to bedtime when my bipolar med (Seroquel) is taken.

This was working well.  All signs were good.

When Craig’s accident devastated our family this spring I carried myself well, abstaining from alcohol during the weeks I was with family members, and taking my Seroquel faithfully.

Then I came home.  Alone.  Well, except for my cat Emma.

I began to drink a little more than I had been when things were going okay before Craig’s fall.  Therefore I was careful not to take my Seroquel when the drinking went into the evening.  In other words my priorities had reversed themselves.  Such has been the case most nights for the past few weeks.  I’ve been missing proper meals and my meds, both my antiretrovirals and my Seroquel, for the sake of the elective drug alcohol.

That, whether or not with all my health issues it makes it number one, becomes a major presenting issue in today’s circumstances.  So long as I drink too much, foregoing my medications, I put my life at risk – whether it be in the medium or long-term.  It just would not be wilful suicide.  Small comfort.

This is no way to pay tribute to Craig.  I am filled with shame, not helpful to be sure.

I certainly do not want Mom to have to bury another child, nor my sisters another sibling.  Not while I have the potential to get back on track.

So, whether or not alcohol is my number one problem (and arguments can certainly be made either way)  it is the number one presenting problem which prevents me from addressing the other ones.

I will be seeing my HIV specialist next week to receive my most recent bloodwork (which was done while I had forgotten, completely, one of my HIV meds when I was away and while I have been missing other meds since my return to Toronto).  If we can salvage a workable drug regimen out of the results it will be the second time I will have dodged the drug resistance bullet in a couple of years.  I hope, if things are okay, that I will have learned my lesson.  For good.

It is perfectly obvious to me, regardless of my prideful misgivings about A.A.’s alcoholism-as-disease model, that seventeen years of sobriety over the last twenty-one years were among the best and most friend-filled times of my life.

If I can summon up the humility to get back on the wagon, and do what has worked so well in the past, then I will be doing myself a huge favour.

That will take willingness on my part which, for the sake of the memory of Craig at the very least, I know I must summon.

Whether that comes before or after one more Pride party obligation, it will come.  It must if I am to survive.

Childhood trauma —-> isolation —-> adolescent trauma —-> isolation—-> sobriety —-> adult trauma —-> isolation—-> PTSD/bipolar —- >

Sobriety.  Recovery.  That must be my path again.  Regardless of the chicken-and-egg questions and the ranking of issues I need to get back to what has worked.  The past is the past, and insights learned are helpful, but not worth anything if I squander my life either physically, mentally or spiritually.

Whether alcoholism is a disease, my disease, or not matters little if I do not survive bipolar and HIV/AIDS.  Yet to do that I must again stop drinking.  That seems abundantly clear.

I went to a meeting Monday night.  It felt like home.  I am going again tonight.  The willingness is slowly returning even if I am hauling a load of stubbornness and pride behind me.

If blogging this is my first attempt to be accountable again, then it is with that hope that I publish this entry today.

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Check-up report


There’s good news, more good news, and still more good news in my latest lab results.

1. My diabetes is being controlled with random glucose at 4.7 thanks, I have to say, to Metformin and Glyburide (and precious little help from many of my dietary choices, especially my sweets binges).

2. My CD-4 count is 590, stable from the last check.

3. My viral load remains below 50 copies or ‘undetectable’.

At 6’3″ my height is unchanged :) and my weight is 63 kilograms (139 pounds), making my body mass index off the charts on the light side.

690px-body_mass_index_chart_svg.png

I am uncomfortably underweight, in the sense that my back and non-existent buttocks make sitting on any uncushioned chairs extremely difficult. I also tend to twist my underweight limbs into odd shapes which, with the neck bone connected to the ankle bone (I’ve obviously skipped over many of the links in between), causes me low-grade pain most of the time.

My doctor offered me a change in one of my antiretroviral medications (switching Zerit to Tenofavir) in the hopes that a little weight might be gained but I’ve put off a decision because of the chance that any change might bump up my viral load. I’m getting used to covering myself up, particularly my legs, even in warm weather because of the sickly look my weight gives me.

All in all, a very good visit to the doc’s.

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Personal good news for World AIDS Day


Living with HIV, since at least 1989, has been a roller-coaster. Yet live I have, which is much more than can be said for so many others.

As treatments have become more sophisticated, and complex, over the years the goal of HIV/AIDS specialists has been to find the combination of antiretroviral drugs, nicknamed “the cocktail” because of its varying mixture, I guess, which works to wrestle down active HIV in the blood.

The standard goal now is for undetectable viral load, a bit of a misnomer since it is known that there is still some virus present in those who test “undetectable”. The problem has been that the best tests cannot quantify below a certain level.

Anyway, because I have been on antiretrovirals since the days when AZT was used as a single line of treatment, it has been a challenge to find combinations of drugs that would work. Some have outlived their usefulness for me, others I could not tolerate, and so on. Back in 2001, after much experimentation with my meds, I achieved “undetectable” status. Unfortunately, for a variety of reasons, that got screwed up a little over a year ago and the struggle has ensued ever since to get my active virus back down.

That day has come, so I learned today.

It took very aggressive steps, including taking twice the usual dosage of one of my new medications, but the goal was achieved. Undetectable. What’s more my CD-4 count, a less specific indicator of immune system health, is 580. While normal is closer to 1000 this is among the highest counts I have had since we started monitoring it in 1990. (When I nearly died in the early 1990s it was as low as 10.)

I am not satisfied.

There is no reason why, having knocked down viral load in me, not once but twice, these medications ought not be widely available to every single person with HIV/AIDS in the world – regardless of their ability to pay. They deserve the chance of some borrowed time as much as any of us in the “developed” world do.

We think nothing of spending billions of dollars to wage war, and yet we lack the will to make life more bearable, and extend it even (at a fraction of the cost), for millions upon millions of the sick.

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Check-up report


Well there were no real surprises today as my specialist filled me in on those recent blood tests. This is not to say it was all good news but, on balance, I am looking forward to whatever comes next.

My viral load, a measurement of HIV activity in the blood, has gone up slightly after several years of being “undetectable” (not non-existent, just under the radar). At 1183, when I have functioned in the past with it in the hundreds of thousands, I am not yet concerned. It is not a trend we will tolerate without aggressive action but, for now, at this level it is not a worry.

The good news is that my CD-4 count, another great indicator of health, at 620 has never been higher since I tested positive in 1989 (at which time it was only 400 and, since, has been as low as 10 when I was gravely ill in the early 90s.)

For now, then, my doctor has instructed me to stay off all HIV meds – since my lapse off them is what brought this little worry on – and tests (called genotyping) are going to determine which of those meds may still work effectively in the future and which ones would have had to be changed in any event.

This leaves me to just keep watch on my diabetes and cholesterol (which I also neglected) and we will discuss where to go from here when I see him again on the 23rd of May.

All in all, I am very content with my state of being!

——————————————————————————–

I googled “HIV glossary” which came up with 776 entries, some of which are in my links.

The ones listed below have their individual characteristics but I used “genotype assay” as a benchmark and they all pass the muster.

One of my favourite Canadian “gateway” sites on HIV, The Canadian AIDS Treatment Information Exchange (CATIE), describes AEGIS as “the most comprehensive collection of AIDS treatment information currently available on the Net” so I begin there (and it happens to be first in alphabetical order).

AEGIS

AIDS Treatment News – the gold standard of newsletters

AMFAR

The Body

The Canadian AIDS Treatment Information Exchange (CATIE)

GMHC – where support all began in New York City

National Institutes of Health (NIH)

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‘Horseshoes up (my) ass!’


Vacation and ‘drug holiday’

I was more anxious than usual this morning as I walked into my HIV specialist’s office. Blood test results were due back and I had plenty of reason to fear that my vacation, and missed medication doses during and since, might have messed up my blood chemistry, potentially leaving me resistant now to some of my meds.

He got right to it.

“Your viral load is undetectable. Your blood sugar is 7.7. Your T-4 count is 600. Congratulations!”

I was dumbfounded.

Then I told him what had been going on. While on vacation bridging September and October I had missed a week’s worth – fully half – of my medication doses. To make matters worse, even when I had returned home I found that I was forgetting doses, so accustomed had I become to going without. In fact, when I finally got my refills of prescriptions last week, I found that I still had a month’s worth of some meds. Even taking into account how some prescriptions always seem to run out before others I knew that I had taken an unintentional gamble with this non-compliance.

“Well, all I can say is you’ve got horseshoes up your ass, my friend!” said the doctor after I ‘fessed up’. “That’s very interesting,” he said, busily writing a note to himself which I pictured in some forthcoming medical journal.

I’ll say…I just don’t ever want to go through the same anxiety of waiting for routine blood tests again. I’m back on track and hope to stay that way! (We’re going to re-check in just a month to be certain.)

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